Medical Misdiagnosis.

Thanks to Stephen Ralph.

Permission to Repost

Hello there,

Some months ago I embarked on trying to find out about issues of clinicalmisdiagnosis surrounding Chronic Fatigue Syndrome in the NHS since the late1980’s when Dr Simon Wessely took on CFS and rigorously promoted CFS andthen CFS/ME in the NHS and in the media.

Here are my present findings….

There is no doubt that patients with rare diseases with a remarkably similarsymptom set as that suffered by people with ME have been wrongly diagnosedas having CFS or CFS/ME since 1988.

The majority of those being wrongly diagnosed are being misdiagnosed by GP’sand general specialists.

Patients are in some instances living for decades with a clinicalmisdiagnosis because their case was never escalated upwards tosuper-specialists at regional research centres.

Putting it bluntly – nobody knows just how many patients currently labelledas having CFS or ME or CFS/ME or even Fibromyalgia have been and are nowliving with a clinical misdiagnosis.

I have been collecting statements from patients on a Behçet’s forum andthose who have contributed so far are all angered that they had to gothrough what they went through before they finally got a re-diagnosis….

All had been touched by the misdiagnosis of CFS or “Chronic Fatigue” or ME.

It is a simple and unchallengeable fact that GP’s and general specialistsare not experts in identifying rare auto-immune diseases such as Behçet’sdisease or Ehlers Danlos Syndrome or Familial Mediterranean Fever amongstother complex and relatively rare conditions.

However, all of these conditions are amenable in some way to specialist andsuper-specialist level treatment that is denied to anyone who has beenmisdiagnosed with “CFS/ME” or Fibromyalgia.

Below I have reproduced the statements I have received so far.

I have removed the contributors names but should anyone wish to investigateindividual cases further I can supply contact details or liaise with thecontributor privately.

I am still collecting statements so this is very much the start of somethingthat will grow.

My recent cease and desist e.mail

As some of you here will remember, I recently sent out a “cease and desist”e.mail to all the relevant liaison psychiatrists – lead by Professor SirSimon Wessely and including Professor Peter White, Professor Michael Sharpeand Professor Trudy Chalder along with Dr Esther Crawley and Dr VincentDeary.

They may have scoffed at that e.mail and had a laugh about my intent or theymay all have just ignored it and carried on regardless.

I would be grateful for anyone reading this to contact me either viaMEActionUK or privately should they see any further claims in any futureresearch studies from UK liaison psychiatry making claims that the list ofsymptoms they perpetually set out are perpetually “medically unexplained.”

As I pointed out to them all, the symptoms they quote in study after studyare fully medically explainable when related to Behçet’s disease and otherrare diseases.

As I pointed out to them all, Behçet’s disease and other rare diseases canand do present themselves with few or even no obvious visible signs that aGP or a general specialist could observe at an out-patient clinic.

This is precisely how a patient becomes a victim of clinical misdiagnosis.

Should anyone reading this spot any future claims that the many symptoms ofME or indeed CFS or indeed Fibromyalgia are “medically unexplained physicalsymptoms” I would like to see such references be they future research papersor media articles.

I have support on this list and back channel within and without the MEcommunity to lodge formal complaints to the relevant professional bodiesabout any doctor who makes any further claims with full knowledge that the“invisible” symptom set relating to Myalgic Encephalomyelitis or “CFS/ME”can be medically explained when applied to the almost identical “invisible”symptom set shared by rare auto-immune inflammatory diseases.

We can all take a stand on this issue and I have no doubt that we can stopthese doctors seriously misleading , misrepresenting and misinforming themedical profession as a whole as well as the public at large.

For over 25 years the use of the diagnosis of CFS and “CFS/ME” has actedlike a massive dragnet scooping up all manner of patients into a trulyheterogeneous patient group.

As with any indiscriminate dragnet, patients who were never originallyintended to caught up have been caught up because nothing was put in placeto facilitate an accurate differential diagnostic process.

Any doctor with a medical degree and 12 months clinical practice has beenable to diagnose a case of “CFS/ME” yet the majority of those diagnosingdoctors are not sufficiently qualified or experienced to spot cases of rarediseases.

Because of the diagnosis of “CFS/ME” the dragnet of patients are not beingreferred on to super specialists and instead patients are all being shuntedinto a cul-de-sac where CBT and Graded Exercise Therapy are persisting asbest practice treatments that will be of no use or possibly harmful topatients carrying a clinical misdiagnosis – especially misdiagnosed patientswho are being denied pharmacological treatments.

In this respect I am now of the view that the NHS and Liaison Psychiatry hasbeen seen to be negligent in protecting an unknown number of vulnerable andseriously ill patients from being clinically misdiagnosed since 1988.

Should anyone reading this know of any other forums such as Facebook wheremisdiagnosed patients could be put in touch with me then by all means dopass this e.mail on and let anyone interested have my e.mail address (stephen . e. ralph @ btinternet . com )

I will post a further update when I have made further progress.

Sincerely,

Stephen Ralph DCR(D) Retired.

Statements from patients subjected to a clinical misdiagnosis

24th May 2009

Dear Stephen,

I hope you do not mind me contacting you; I was very interested to read yourcomment on the New Scientist website in reply to the interview with Prof.Wessely and then found your email address from the ME Action UK website.

I have been seriously ill since 1997 and for most of that time have had adiagnosis of CFS or somatisation disorder (depending on which doctor I wasseeing). My health continued to deteriorate and about two years ago Ifinally managed to get some doctors to take me seriously after my healthproblems became severe enough to require hospitalisation.

I then went through a long journey of medical investigations which concludedwith the fact that I have Behcet’s Disease and Ehlers-Danlos Syndrome.

For a long time I have been of the opinion that many people diagnosed withCFS or ME probably actually have other illnesses (either currently knownabout or not). Whilst going through my diagnosis for Behcet’s it became veryclear to me quite how many serious, but often treatable, physical illnessesthere are with the same groups of symptoms. Many of these are complicated todiagnose and most patients given a diagnosis of CFS are not thoroughlyinvestigated for other possible conditions.

I can accept that somatisation disorder and Wessely’s form of CFS exist, butI think relatively few patients have these disorders. I strongly feel, thatfor the majority of patients with serious physical conditions causing amultitude of symptoms, the psychological treatment approach is nothing lessthan psychological torture.

Reading your comment made me wonder how many other people with Behcet’sdisease have been put through this.

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30th April 2013

Hi everyone,

Just to let everyone know that myself, my son aged 21 and my daughter aged12 have been diagnosed with Ehlers Danlos Syndrome type 3 at UCH byProfessor Graham and my daughter with hypermobility at Gt Ormond St.

My son and myself have also been diagnosed with P.O.T.S. by ProfessorMathias at St Mary’s Paddington and I have the added pleasure ofdysaunotomia.

My daughter is awaiting a referral for P.O.T.S symptoms backed up by ProfGraham after I relayed my feeling that Gt Ormond St had not taken me or herseriously.

I was diagnosed with M.E. by William Weir in 1990 and my children have ahistory of migraine, febrile temperature, severe growing pains, fatigue,nausea and dizziness.

None of us have ever dislocated joints, have overly stretchy skin or can dothe splits!

Am I angry?

I’m angry about the kids.

I have been accused of projection of symptoms and both my kids were referredand assessed by the child and adolescent mental health service, with noaction required!

For my 12 yr old who has the most severe symptoms of the two it’s hugelyimportant as she will not be treated in the same way I have endured for thelast 20 odd years, but of course for a mother it’s a hollow victory.

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6 May 2013

Hi Steve

Good on you (for working on your misdiagnosis project)

1) what was the misdiagnosis?

Coeliac Disease (this was before the new blood tests were available). I hada spike in my coeliac enzymes and was told I had coeliac disease for about 2years before that was discarded.

Also because of the punched out lesions etc a few dermatologists labelled meas doing ‘self mutilation’ but as the specialists now are saying I waspresenting with oral and genital ulcers at the same time and as one doctorsaid that should have been a ‘red rag to a bull’.

Years ago I was told I had chronic fatigue but one doctor said that was asymptom not a diagnosis which makes sense as a lot of diseases cause chronicfatigue.

2) how long did you have to struggle with that misdiagnosis? – 10 years

Hope your project helps others.

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7 May 2013

It took 20yrs to diagnose my behcets. Kept being told that joints were downto arthritis and general wear and tear, Fatigue was down to too many latenights and ulcers down to bad oral hygiene and genital ulcers were herpes.

I ended up in hospital with another problem, where after talking to drs(different hospital) they realised , with all other problems, it all addedup to behcets. Since receiving the right treatment I have improved and formost of the time it stays under control although still have flares ofdiffering degrees.

In a way I was lucky to be in the right place at the right time when I gotdiagnosed, as I do really think that if I had continued to see someone atthe first hospital I would still be undiagnosed and not on the correctmedication.

With regards to my bones, I was found to have very little wear and tear anda higher than average bone density (which helps while being on long termsteroids)

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13 May 2013

Hello Stephen,

My medical history has spanned a continuous period of disability and illhealth since approximately 1989. However it is possible that I have in factbeen ill since birth.

My first diagnosis and recognition of muscle weakness and other debilitatingsymptoms was also one of Chronic Fatigue Syndrome. I was basicly left to geton and find my own solutions to my condition which progressed to my beingvirtually bedridden all the time.

By 2000 I was retired from work in the Local Authority as I was given noassistance to be able to return. I was forced to accept retirement under apsychiatric cause because the Local Authority at that time refused to acceptthat Chronic Fatigue Syndrome existed and could be a permenant condition.

However I was then rediagnosed with Behcets Disease but still not giventreatment as the Doctors I saw didn’t connect the muscle weakness and otherneurological Symptoms to the behcets. This still went under the diagnosis ofChronic Fatigue Syndrome and thus was ignored. I then had an EMG test on myright eye due to facial drooping which was then diagnosed with MyastheniaGravis but the further tests to confirm Generalised Myasthenia were negativeand so the diagnoses of Myasthenia Occuar was given.

The diagnosis of Behects was withdrawn in favour of it being Chronic FatigueSyndrome and Myasthenia Occular.

I was not given any medication for the myasthenia and by this time I hadlost my balance with vision, speech difficulties, incontinence, urineretention, extreme pain and spasm and spasticity, numbness, tingling and awhole realm of under skin lumps, pustules etc. I was also suffering weakbreathing muscles and had also been diagnosed with Sleep Apnea.

By fluke around 2007 I attended my local hospital eye department whodiagnosed me with a stroke but this couldn’t be proved on MRI. I wasreferred to a new Neurologist who diagnosed me with Neurobehects and ataxia.

The eye department further diagnosed and undiagnosed 5 other vision problemsincluding macular, optic neuritis, myasthenia. But then decided it wasn’tany of these so have left me with my vision deteriating at a fast rate.

I was referred back to my rheumatologist in another hospital and taken intohospital. A different Neurologist [who I had never met and didn’t evenexamine me] said there was nothing wrong with me at all and it was “all inmy mind”. I was referred to a psychiatrist for sommertisation but foughtthis referral and lack of diagnosis through the hospital complaintsprocedure. It was then changed back again to Behcets Disease,

Myasthenia Occular, Chronic Fatigue Syndrome, sleep apnea and a whole realmof other symptons. The list took up the first page of the doctors reportswhich naturally caused problems when attending new Dr’s or hospitals.

My illness was so bad at one time that I was confined to bed, unable tospeak with memory loss and cognative problems. I couldn’t eat and drink andthought I would die. I errupted in lumps under the skin and was rushed intohospital where I obtained the first treatment/medication I’d ever beengiven. Prednisolone was given at extremely high doses and I picked up enoughto be sent home.

The Doctors I had been seeing continued on with the prednisolone and addedImmune Suppressants which have had there own set of problems.

Since then I still have numerous problems with my health some of which isattributed to behects and some which is either just ignored or passed over.This is still the same today even though now it is accepted I do have amedical problem there is nearly always an argument between doctors with mein the middle. Each time I have another symptom I am referred to yet anotherspecialist who looks into my problems but cannot diagnose me and never talksto my other doctors to get a consensous. I must have seen around 12different consultants in the last year alone. There are mistakes andincorrect information all over my medcial file which has now made itimpossible.

This in my opinion has made me more ill and I still am not really convincedthey have it right.

You may or may not be surprised that it was at Guy’s and St THomas’sHospital neurology department I was

re-diagnosed with Chronic fatigue Syndrome. Around 2008 The psychiatrist Isaw to confirm this was attached to the CFS clinic at Kings. At the time allthe other symptoms I was experiencing [i.e balance, speech, drooping facialmuscles, incontinence etc etc] were written in my psychological report as“Unexplained Medical Symptoms” and brushed aside.

I was meant to attend Kings CFS clinic but my PCT refused funding as therewas a clinic at my local hospital. I attended my local clinic and saw aclinical psychologist who was appalled at my story and wrote a 5 page reportstating that I did indeed have the symptoms of CFS but that she had neverseen the additional symptoms that had been written off as “UnexplainedMedical Symptoms” within their clinic and she hoped they would continue tobe investigated.

She copied this to my Neurologists at Guy’s and had 10 sessions at a CFScourse at my local hospital for learning how to pace myself, no otherassistance or treatment was given. All the other people at these sessionswere newly diagnosed and completely shocked at seeing me in such a state. Itdidn’t help them to know I had been diagnosed with CFS since 1989/90 and itdidn’t help me because this was targeted at people newly diagnosed, most ofwhom were still able to work and predominantly had the fatigue element ofCFS.

At my next appointment at Guy’s when I saw the neurologist again she statedI’d had a miraculous recovery and signed me off her books. Of course Ihadn’t had a miraculous recovery at all. But moreso I thought it waspunishment for the clinical psychologist challenging her diagnosis….I wasa trouble maker in otherwords.

I was therefore left to get on with it once again and by then I was so ill Icouldn’t get out of bed and was moved in to the back room of my house andstayed there for around 2 years trying to fight my own way out. It was byfluke at my local hospital again that the eye department did a field test onmy eyesight and found out I had gone blind down 1 side of my vision. Theythought i’d had a stroke and at the time I was relieved to hear this [soundsstrange but at least it was some explanation]. I told them of all theseother symptoms and was referred to a neurologist again who diagnosed me withNeurobehcets. He referred me back to Guy’s and St Thomas’s Rheumatologistwho had previously diagnosed me with behcets.

This Consultant took me into St Thomas’s for 5 days and it was during thisstay that a consultant from the Guy’s Neurology Department [again] came tosee me for 5 minutes and refused to examine me stating that I had a mentalhealth problem and not a medical one. He wrote to all my Dr’s telling themthis and stated that he would not agree with my having any medication atall. Further unbeknown to me he wrote a referral to a Psychiatrist attachedto guy’s stating that he thought I had sommertisation. Luckily one of theRheumatology Student Dr’s was so appalled that he secretly copied me in onthe letter’s….otherwise I wouldn’t have known until the psychiatristsappointment had come through.

Once again I was left with no treatment and became stuck between 3consultants basicly arguing amongst themselves. I was having to take photo’sof my private areas to show the blisters and ulcers and take them with me toput on file. I was terrified for my life that I would be written off with alabel of “sommertisation”. Another twist of fate was found as the PCTrefused the funding for the psychiatrist. I had written to them explainingthat I’d had no previous knowledge of the referral and was in the process ofcomplaining about the Neurologist who had referred me. This was enough toput the PCT off from funding it.

The rheumatologist at St Thomas’s stuck with me and agreed that I didn’tneed to see a psychiatrist and I am still with him and the neurologist at mylocal hospital.

As I said before, my problems still exist within the medical system but canyou imagine what might of happened to me if the Neurology Department atGuy’s had got their own way and I got the label of “Sommertisation”…..it’sbad enough now, but I dread to think what it could have been.

sorry if I have gone on….but this example is still just a short version ofwhat has happened to me in the medical system…..I have thought of gettinga Doctor to look through all my medical files and try to piece together mymedical history because the files are in such a mess with lots ofunaccuracy’s, mistakes and things……but who could I trust to do that ????

I had the drive to fight before but I am so unwell now that tackling thesethings makes me more ill.

Sorry if I went on but you know what it’s like once you get going…..thisis only a short version.

I admire someone like you and hope you gain headway in this……if there isanything you think may help…let me know.

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13 May 2013

Hello Stephen,

I was told that l perhaps had ME and was treated like a time waster foryears until l became so ill that l could barely walk and lost a huge amountof weight. l was unable to eat as my joints in my body were so painfull thateven my jaws were so sore l couldn’t chew food.

When l developed genital ulcers my doctor told me to go to the VD clinic inthe Royal Voctoria Hospital in Belfast and it was there that an imunoligistdiagnosed Behcets. l had to fight for benefits and was told by a boarddoctor that if l could eat bread and drink water l would be fine.

l wrote to the chief medical officer of Northern Ireland and he replied thatthe doctors comments were perfectly correct. lt wasn’t until the diagnosesof Behcets that l was given a low rate of DLA.

l am now being told by ATOS that l am fit for work despite being almost bedridden most days and l am actually seeing my doctor today to get a letter tosay l am unable to attend a work activity club. For some reason Behcetssuffers are not understood. lt isn’t a visual illness and is not outwardlyevident so most individuals feel it doesn’t exist.

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13 May 2013

Wow you guys have had it tuff and still smiling .

Well hear is my little boring story.

i think it all started with me when i was about 5 that is when i had my fisttooth taken out .by 8 i had all my front teeth out and had false teeth pitin from then to now all ways had bad teeth and i am just about to have an opto have the last 4 ( all i have ) out and fixed . i never smiled as a kidwell not even now .

then when i was about 8 or 9 i suffered tummy pain all the time my motherwas told my body was changing i was growing up it was nothing just sometummy ulcers given some med’s and told i would grow out of them . then thebad headaches started and over my teen years they just grow and grow i didnot think pain could be so bad . the Dr put me on the pill to see if thatwould help but no .

at 19 i was married headaches pain still growing had fist baby at 23 next 24from then on my headaches went to migraines i think i was given everytreatment and drug known to man eg: cryogenics, morphine,pethidine,lidocaineinfusions ,opium ,marcaine injections,(in to head face eye ) grass ( thatmade me sick ) and there were a few more things . i have just trend 50 andcan;t think of a day i have not had a headache .

in my late 30th’s i was told my joint pain was arthritis and you will justhave to live with it . 7 days ago it has been 7 years i was told i had BDnow all the pain and funny things that have happen to my in my life and i amwould think there is a lot more to come i can deal with most things but itis the pain I have that i can’t handle 24/7 you can only cry so much .

but i will not let this bet me . i hope this helps in some little way if youwont to know more just ask .

thank you

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15 May 2013

Hello Stephen,

I had numerous bouts of ‘tonsillitis’ from a very young child but this andrepeated mouth ulcers were the only problems I had until aged 24, when I hada complete physical collapse.

It was diagnosed by a hospital consultant as ME (very fashionable 25 yearsago.) Looking back I can see that it was, of course, Behcets – joint pains,exhaustion, headaches, muscle weakness, ulcers, stomach problems,memory/concentration problems etc.

After complete bed rest for nearly a year I recovered to a reasonably goodextent, though never back to the energetic person I had formally been. Ichanged my lifestyle accordingly and things were okay until a couple ofyears after the birth of my 2nd child. Then everything started up again,with the joint pains and ulcers (now genital as well) becoming severe.

My GP was very sympathetic and sent me for lots of tests, including for STIs(which I knew wasn’t the case!) Eventually a biopsy was done on one of thegenital ulcers by a consultant gynaecologist – a grim procedure but thebiopsy result came back as “entirely consistent with

Behcets Disease”, so that – along with the other associated symptoms – meantI was given the diagnosis of Behcets with a lot of certainty on theconsultant’s part. What a relief, after more than a decade of knowing thatME was just not correct.

However, my GP refused to accept the consultant’s diagnosis. To say I wasupset is an understatement! I wanted to understand what I actually had, andhow it could be treated so I could try to get my life back on track.

The GP was keen for me to ‘accept’ that I had Chronic Fatigue Syndrome, ashe termed it. He then decided I might have Lupus. Or a stomach ulcer.Basically, he said, he wanted us to keep an open mind in case the consultantwas wrong – he said that he had other patients whose diagnosis changed andthey had found this very difficult. He felt it did not matter what thedisease was called anyway…I tried to explain that it mattered very much tome, the patient – but could not get through to him.

I think this GP was well meaning, but for me it was a disaster. I felt likeI was hitting my head against a brick wall, and using up so much energy Ididn’t have…it was a very upsetting time.

Anyway, I changed GPs and have had no problems since then – with GPs orconsultants. Some may not know much about Behcets but they accept thediagnosis and I am treated accordingly

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16 May 2013

I also experienced a similar thing a couple of years ago, prior to myBehcet’s diagnosis. I was told by a rheumatologist that it did not matterwhat the name of the disease was. She told me that what counts and isimportant is for me to feel better… but what these doctors seem to forgetis that without knowing exactly what disease it is, then how can you getbetter without the proper treatment?

For people who are supposed to be very intelligent professionals, theysometimes act clueless. I could kind of see her point in a small way; butits not only important because of the need for proper, disease-specifictreatments, but also for our own peace of mind.

Without knowing exactly what it was that I had that was making me so sickand causing so much pain, I was so scared and full of so much anxiety.Sometimes I was so afraid to go to sleep at night because I had no clue ifmy mysterious illness was life-threatening or not.

Also, without having a positive diagnosis to label my mysterious illness, Ioften doubted its true existence and would go through weaker moments when Ibelieved I was just imagining it all or was going crazy.

The doctors in the emergency room would very quickly treat me as a “drugseeker” especially because at that time, I ended up in the ER with severepain attacks, but had no known reason for the ongoing pain. I even had a“pain specialist” who dealt with weaning people off painkillers come see meduring one of my bad Behcet’s attacks– she actually stood there at mybedside telling me that I needed to stop demanding pain meds before I becomefully dependant on them– the dumb thing was that I wasn’t even on aroundthe clock pain management at home during this time and that’s why I ended upin the ER when it would get bad enough.

She couldn’t grasp the understanding that I was truly experiencing as severeof pain as I was, mainly just because I didn’t have a diagnosis of adisease. So I very much agree that getting a proper diagnosis is vital to aperson’s well-being, both physically and emotionally.

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Statement from the author

Last year I received an e.mail from a subscriber to Co Cure http://www.co-cure.orgwho had read one of my articles about medical misdiagnosis.

The writer told me she knew of a 19 year old woman in Australia who had diedfrom untreated Behçet’s disease because the patient had been wronglydiagnosed with Chronic Fatigue Syndrome.

Several years ago whilst I was fighting my re-diagnosis battle I had alengthy conversation with a woman in London who was volunteering on theBehçet’s Syndrome Society helpline.

This woman told me that she went for a little over 10 years with the wrongdiagnosis of Chronic Fatigue Syndrome (CFS).

Having made prior attempts to have her CFS diagnosis overturned, herdiagnosis was only changed to Behçet’s syndrome when she suddenly lost thetotal sight in her left eye and the partial sight in her right eye.

It was only when this woman became almost totally blind did the medicalprofession start taking her “invisible” symptoms seriously in the context ofan autoimmune vasculitic disease.

At that time I was told by the Behçet’s Syndrome Society on many occasionsthat Chronic Fatigue Syndrome was the most common misdiagnosis for cases ofBehçet’s disease amongst their membership.

In January 2013 during an e.mail exchange with Professor Sir Simon Wessely,he revealed to me that he could not say whether or not he had ever seen acase of Behçet’s disease pass through his out-patient clinic.

Recently I joined a forum for people like me who have Behçet’s disease and Iasked a question about clinical misdiagnosis.

The replies I received are all printed below however I have removed anyone’sname to protect their privacy.

All those who have contributed knew that I was working on a misdiagnosisproject.

However, I now know that there are other rare conditions that are also beingwrongly diagnosed as Chronic Fatigue Syndrome including FamilialMediterranean Fever (FMF) and Ehlers Danlos Syndrome (EDS).

Any single clinical misdiagnosis can be devastating for the patient andtheir families due to the fact that the correct treatment, medication andtherapies are denied those who are medically misdiagnosed.

In my own case, my parents had to become my full time carers for 8 yearswhen I became 75% bedbound and 95% housebound from the severity of mysymptoms.

My illness forced my Mum and Dad to move house to a different region so wecould afford a property large enough for me to have my own bedroom as I hadbeen living in their lounge that had been turned into a bedsit with blackedout windows.

Patients die due to misdiagnoses yet the doctors involved do not take itseriously unless such cases end up with the patient dying and the case beingtaken to Court.

By and large, doctors get away with making misdiagnoses and are rarely everheld accountable for their medical mistakes that can condemn a patient fordecades of unneeded suffering.

The patient has absolutely no protection as you will see from reading thestatements I have printed below.

Something needs to be done and a line needs to be drawn in the sand.

This situation – an open wound in the NHS – needs to be brought to an end.

Today, patients are now being routinely misdiagnosed by doctorsinsufficiently qualified or experienced to recognise complex biomedicalautoimmune and neuroimmune diseases.

These doctors are empowered with the benign psychosocial diagnosis ofChronic Fatigue Syndrome to enable them to make those misdiagnoses.

Back in 1988, Chronic Fatigue Syndrome (pioneered by the then Dr SimonWessely) was introduced to the NHS in a totally uncontrolled fashion.

Any doctor – be they a GP or a general specialists – became able to diagnosea case of Chronic Fatigue Syndrome yet only a handful of super-specialistshere in the UK are fully competent to recognise and diagnose relatively rarediseases such as Behçet’s disease, EDS or FMF.

Instead of patients being referred upwards to regional super-specialistcentres; patients who need this sort of referral are instead being told theyhave CFS and are being shunted sideways into a dead end cul-de-sac.

As a retired diagnostic radiographer it is my view that those in charge ofvigorously proliferating CFS and then ME/CFS across our National

Health Service should have firstly checked to ensure that their definitionof Chronic Fatigue Syndrome relating to the symptoms they claim to be“medically unexplained physical symptoms” did not partially or whollyoverlap the identical set of symptoms relating to diseases that GP’s andgeneral specialists would be unqualified to recognise and correctly diagnosethemselves.

Those in charge of CFS should have given the rest of the medical professionfrom GP level upwards a sort of “watch list” so that doctors who may notknow much about BD, EDS or FMF amongst other rare diseases were aware of allthe alternative diagnostic possibilities.

I have established from Professor Sir Simon Wessely that he and hiscolleagues never did take a look to see if their “medically unexplainedphysical symptoms” effectively smothered patients presenting with diseasesthat manifest the same set of “invisible” symptoms whilst presenting withfew or even no visible signs.

In this respect, twenty five years ago when Chronic Fatigue Syndrome came tothe NHS, this diagnosis alone “broke” the well established and respectedprocess of accurate differential diagnosis and the accompanying process ofupward referral to regional super-specialist centres.

After 25 years of clinicians medically misdiagnosing patients because of theavailability of CFS, nobody knows how many patients have become innocentvictims of those who still vigorously promote Chronic Fatigue Syndrome as afunctional psychosomatic disorder in the present day NHS.

As an indicator to just how widespread this situation has become; theability to correctly diagnose and treat cases of Behçet’s disease was so badthat only last year the Behçet’s Syndrome Society succeeded in setting up 3specialist centres across NHS England.

These super-specialist centres rely upon GP’s and general specialists beingable to recognise cases of Behçet’s disease when such cases may not presentwith the stereotypical visible signs of mouth and or genital ulcers.

As Behçet’s disease can present with no visible signs on examination, it isstill be the case that GP’s and general specialists will unwittinglymisdiagnose patients with CFS until there is a fundamental change to thepresent differential diagnostic process that puts Chronic Fatigue Syndromefront and centre as a benign diagnostic option for “complex” cases thatappear to a GP or a general specialist to have no apparent cause.

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Carole

I am an eclectic contradiction.
A shy yet open woman.
A free spirit following the rules.
A homebody with wanderlust.
A realist who believes in all things magical.
A down to earth avid dreamer.
A town-born country girl.
A child with an old soul.

This blog is my story about a life forever changed by chronic illness. I hope you'll laugh and cry with me as I try to make sense of it all. Oh, and nothing I say should ever be construed as offering medical or legal advice.